Boobs On Ice™

What's Making Waves in Our Brains?

"The cell phone is a remarkable invention and a breakthrough of great social importance. Our society will no longer do without cell phones. None of the members on the expert committee has stopped or intends to stop using cell telephones. This includes Dr. David Servan-Schreiber, a 16 year survivor of brain cancer. However, we, the users, must all take precautionary measures in view of recent scientific data on the biological effects of cell phone use, especially those who already have cancer."

Thus doctors at the University of Pittsburgh Cancer Institute, based on advice from an international panel, are urging not panic, but caution. But the number of doctors in their advisory group, and their cautious, workmanlike approach have made an impression on me.

Now with everything from estrogen, to food additives, to where my father worked, to what was in the water when I was five, to the air we breathe and what's in our mascara suspect as something that may have caused my cancer in the first place or make it more likely to pop up again, this is all a little unsettling.

And while I'm not unduly concerned, I am now bothered that my 10 year old granddaughter owns a cell phone - and I'm hoping she'll use it primarily for texting rather than talking.

Perhaps what gave me greatest pause recently were not the words in the Pittsburgh cautionary bulletin - but the image shown. 

"1) Electromagnetic fields from cell phones are estimated to penetrate the brain especially in children. (Figure 1.) . .  Modeling in the diagram below estimate that young children are more susceptible to electromagnetic fields due to smaller sized brains and softer brain tissue."

Figure 1. Estimation of the penetration of electromagnetic radiation from a cell phone based on age (Frequency GSM 900 Mhz) (On the right, a scale showing the Specific Absorption Rate at different depths, in W/kg) [1]

That's downright disturbing. While the doctors writing the report feel that "Electromagnetic fields generated by cell phones should be considered a potential human health risk" they also caution that not enough time has passed to really have data that is conclusive.

And perhaps the most important observation is that although studies have NOT proven that cell phones are safe NOR show that they present a hazard.

So in the meantime, while a definitive answer is in the works - and who can predict when all experts will agree (I predict: never) - why not do what this panel advises and be aware that:

  "..growing evidence indicates that we should reduce exposures, while research continues on this important question.

Read more about the recommendations from the Center for Environmental Oncology and their Environmental Health information. And let's be safe out there. At least as safe as we can figure out how to be.

Living our own "Last Lecture"

I don't usually post the same general content on two blogs, but this is an exceptional time and a cluster of very visible cancer deaths seem to be all around us. So the Boobs blog readers who don't always read the Artsy Asylum Blog may have missed what I passed on there.

I wanted to share it with all of the people who I have any reach to - because I believe it's such an important thing that I need to talk about.

Here's where I am. Since December 7th 2007 I'm in and out of hospitals and clinics and medical offices more than anyone wants to be. And maybe as a part of this or because it's just who I am, it's agonizingly difficult for me to see people with cancer deteriorate and die - even those I do not know, or know only slightly. One of these, Randy Pausch, the Carnegie Mellon professor whose "last lecture" made him famous, died today almost a year after he was diagnosed with pancreatic cancer.

In the time leading up to his death Randy looked good, in contrast with Tony Snow's appearance in the months before he died earlier in July of colon cancer that had spread to first his liver and then elsewhere. Tony was gaunt and had aged twenty years in my eyes. My heart hurt to see him.

Then every weekday that Leroy Seivers of NPR writes his blog I get emotional again as I see evidence of a steady decline and that the always insightful and frank Leroy is near the end of his life, as he now weighs the pros and cons of hospice, and has a home health aide four times a week.

But as sadness envelops me, Randy Pausch simply bloomed! In the months before his death Randy was upbeat and seemed unfazed by what the rest of us are overwhelmed by.

And that gives us all something to consider.

When he gave this Carnegie Mellon commencement address in May, he had lived three months longer than the three to six months doctors had predicted, leading a friend to say he was “beating the Reaper.”

“We don’t beat the Reaper by living longer,” Pausch said. “We beat the Reaper by living well.”

My message in reflection:

• Please love others and live well while you can.
• Give generously of yourself and your spirit.
• Adopt a cause or two.
• Be present to what's happening around you and not distracted by the latest shiny thing of the blogosphere.

It's easy to be engaged by internet popularity, blog stats, being included in lists and invited to functions. Things are nice to own. But will that really matter when you face the end of the road?

Like Randy Paush who was only 47, or others we know who were suddenly stricken and died much earlier, we never know when an unexpected diagnosis - or a bus - will mark the end of our time here.

Let's make today even - simply this day - one that we'd be proud to call our last.

And then tomorrow let's get up and do it again.

And while you're doing it, just know that I love you all.

How the Peapods Came to the Hermit and How You Can Help

    This video http://www.facebook.com/video/video.php?v=24061806261&ref=nf is a quick snippet of the Frozen Peas campsite in Second Life as part of this year's Relay for Life virtual fund raising event sponsored by the American Cancer Society.

Team Captain Joyce Bettencort writes:

"The theme this year was 'Heroes' and to a lot of us in the online, social media scene Susan Reynolds, her personal fight with breast cancer and the warmth and courage of sharing her experiences with us, has made her our hero. Because of that, several us, with Susan's blessings and help put together a team and campsite for this years virtual relay event."

The virtual relay walk and events starts at 10AM (PST) this Saturday the 19th and you can walk with us and visit the campsite in SL at:

http://slurl.com/secondlife/Heroes%2010/115/95/25

To donate to the Frozen Peas team go to:  http://tinyurl.com/6czpxl 

And find out more info on Susan and the real life Frozen Peas on her blog site: http://boobsonice.com/

Note Joyce & other Second Life Pea-funders came up with this idea & jumped in with no input from me other than "sure you should do it" Not only did I have no idea what the theme was to be I'm not sure anyone did. Now though embarrassed to be called a hero,I thank them from the bottom of my heart. Most people don't know that since my second surgery in June, this time involving multiple lines of stitches all across my chest, things have been beyond difficult. In the month since the surgery my incisions have still not closed. Yes, that's painful in may ways and it has my emotions raw and often depressed. I've become quite the hermit. So an idea of a second Life campsite visit has been so emotional an idea for me - well I just couldn't bring myself to do it. For the second time this week I had to say I couldn't do something - and all because I knew I'd fall apart when I saw it. I knew I'd be in tears at their talent & generosity. Instead they brought the peek to me through this video and I'm more touched than I can say. Please help me thank them by giving your support on Sat July19th in the relay for Life. If you can sign into Second Life and Visit the Pea Team campsite at http://slurl.com/secondlife/Heroes%2010/115/95/25 it would be an honor. And if you'd like to make a donation through the website at http://tinyurl.com/6czpxl  Super! Thanks to all who helped in Second Life & previously. I am deeply grateful & profoundly humbled.                   Susan - aka Tynan Clary in Second Life

   

The Pea Fund and the Kindle Pipedream

The new Kindle looks cute in pink - but not cute enough for me to want just because it's a nifty color. And the fact that along with lots of cancer patients I can't afford one now doesn't mean I don't want the first generation kindle as is, whatever color.

But when I hear about the new technology in the model coming later this year I might have to hold that thought of voracious "wanting" in the here and now. Should I in fact be thankful that there's not the money in the cookie jar for this extra?

Maybe. because allegedly the new one is even better. The last issue is will the price stay the same or might it drop as did the iphone? That could make all the difference.

On the other hand Amazin' Amazon could come up with a pea green model and donate some to the Frozen Pea Fund for patient use. I'd have to try it out wouldn't I?

Or so what if it wasn't green. What if it was just a Kindle with a sticker to show that we have friends helping us stand up against cancer.

Ah, now THAT would be a brilliant use of web 2.0 and the social media space inside all our heads. Patients do sit around at doctors' appointments and have a lot of down time in general. What could be better than having a kindle to keep us company and in touch?

And what could be better for Amazon than to have a Kindle in hundreds of hands in hospitals and doctors' offices and cafes and - well spread across the country? Which all goes to show that I may be sick but my brain's not dead yet.

More important however is this question. Who's going to pitch this at Amazon?

2008, The Year You Stop Thinking And Write

Each of us has our own exclusive story and no one else can tell it better. We have our unique views on life and on the lives of others.

                   Susan Scharfman

What Goes in Your Body?

I'm trying to eat better since I was diagnosed with cancer in December and even better since the complications of my second surgery in June.

Never much of a fried foods person I've always liked fruits and vegetables but over the last six months have added some things to my diet and subtracted others in the interest of wellness. Most of the time I'm confident that I'm doing a good job, especially with the help of shopper food/manager daughter Kate who has been somewhat cornered into the role of nutrition guru since she's smart, savvy, a great researcher and has taken on the flipped upside-down role of stay-at-home mom to me.

We're lucky to be guided by my friend and medical librarian Patricia Anderson who tells us everything we didn't want to know about plant estrogens which I must avoid because my tumor cells need estrogen to grow. But still sometimes I wonder if I could be doing more.

So I was interested to see that Tara Parker-Pope  who writes on health for the New York Times Blog recently asked Dr. Jonny Bowden, author of “The 150 Healthiest Foods on Earth,” (some of them fairly obscure) to list some favorite foods that are - thank you Tara for specifying this part - easy to find.

Here's his list:

1. Beets
2. Cabbage.
3. Swiss chard
4. Cinnamon
5. Pomegranate juice
6. Dried plums
7. Pumpkin seeds
8. Sardines
9. Turmeric
10. Frozen blueberries
11. Canned pumpkin

So how did you do?

How many of these do you eat regularly? Forced to poke around your pantry to see if you've got any of these in stock?

I've got three of the eleven in the house; one only by accident I admit. (Thank you Connie Reece for the Texas nuts that contained a fair number of pumpkin seeds which I actually was surprised to love. Now I just need to find your supplier.)

Blueberries top my cereal every morning and I love beets but have them only occasionally. Cabbage is not something I love but I don't dislike it either and it is part of salads that I routinely order when eating out or via take-out.

Pomegranate juice is new for me but very tasty, not too tart at all though some think so.

Cinnamon is hard to fit into my routine, though and I wonder if it is worth the effort for the little I'd actually consume without wanting to head off to the pastry shop for something that would be decidedly unhealthy.

Sardines and canned pumpkin though? Don't look for that happening any time soon.

.
Put it to Use

To find suggestions on how to include these foods in our diets I poked around here and then looking further into this I found that an article in Mental Floss touts the goodness of all portions of the pumpkin, including the blossom, and provides a handy chart to back up the information.

Doctors Patients Friends and Strangers

If you want your dollars to go directly to cancer research, one option is to give directly to an event that raises more money than any other athletic fundraising event in the country and in 2007 donated 100% of every rider-raised dollar directly to cancer research and treatment at Dana-Farber Cancer Institute in Boston.

Over 200 riders in The Pan-Massachusetts Challenge, the nation’s original fundraising bike-a-thon, are cancer survivors. Thousands of riders and volunteers have lost loved ones to the disease. Still more ride in honor of those in treatment.

The PMC has contributed more than $200 million to lifesaving cancer research and treatment at Dana-Farber Cancer Institute since its 1980 inception.

My friend Doug Haslam is a rider who needs your support. he rides in a pure spirit of generosity, saying

"Any physical hardship that we face in trying to complete the ride will always pale in comparison to what people face in fighting cancer."

Doctors, patients, friends and strangers join in this race as teammates, riding for a unified goal. I hope you'll help them. If everyone who reads this gave just ONE Dollar Doug would be well on his way to his goal. And perhaps cancer might even be conquered in my lifetime.

The Day After

I remember Thursday - kind of. I was supposed to go home. It had been a hell of a day - and a night - and another day with neither sleep nor a handle on pain control.

There was no clock. It made it hard to place what was happening when and just how unlike the plan this recuperation was.

While I grappled with total inability to sleep (think escape), the doctors grappled with the unknown: the mysterious source of the excruciating pain in my breastbone . . . not connected in any obvious way to my breast surgery itself.

In pre-op pain wasn't an issue and in post-op I reported it as a 10.5 on a scale from 1 to 10. Wednesday night a resident on call was called multiple times by the nurses, but never responded.

I was in bad shape

It's hard to treat what you don't understand granted but from a patient's point of view it's hard to cope with what you don't understand. A suddenly fractured sternum Is what I'd feared we had. More than one doctor suggested heart issues. Only one suspected some Gastrointestinal issue. Nobody mentioned the word cancer.

All I cared was that somebody had to find out what was going on behind the pain. Instead what we found out was how to manage it.

After there was "something off" about an EKG, a second one was asked for. Both were inconclusive yet different from a pre-surgical chart.

The cardiac resident went to talk to her boss about something heart related while the surgical resident suggested an upper GI issue but that wasn't perused. The cardiac guy never did show up when he was supposed to follow up two days in a row.  I never got an explanation of that either.

An IV pump arrived after a full day. I got to push a little button for on-demand delivery of a new pain medication, then another.

To demonstrate how serious my symptoms were I opted for a big needle in my backside rather than wait the required time for the medication that was being used unsuccessfully to keep my stomach contents - jello and water - in place.

Writing a week later I understand that this was not the pain I was supposed to be feeling, nor the panic. But at the time it was both overwhelming and terrifying. Worse; I don't know what could have been done to keep it from happening.

Looking up

Things are better now. I can't say I'm normal but I'm at the point I thought I'd be last Friday (two days after surgery) but it's been over a week.

The rest of the days following surgery run like an old flickering movie in my mind now. But the problem with the movie is that during some periods - maybe those of most intense pain perhaps - there are gaps. My daughter tells me things I've supposedly heard before. They're new to me.

Having the energy and intellect for Monk and Psych rerun marathons and not much else. I'm declaring the rest of the month vegetating time because face it, I'm planted here for the duration.

A Little Post-Surgical Glitch

Someone needs to remind me that I'm seriously old. I didn't take that into account to the degree I should have.

Five days ago my surgery took longer than anticipated. Then non-cancer related complications meant that my hospital stay was an extended one. I didn't sleep for two days and had barf on my glasses on and off for three - could have been more.

Wondering a few weeks ago if I would do this rebuilding process again, I now have my answer. There's not a chance I would unless I were much younger. And I'm not.

I thought I was prepared

The aftermath of my mastectomy was mild compared to the pain from complications this time. Or maybe it's that this is my second major surgery in six months. Or I'm just too old to have done this.

When I've had time to forget this one perhaps I'll feel differently. If the brand new specialists I'll be working with on these new issues perform miracles or if other symptoms clear up tomorrow and I am left to treat only the swollen black and blue green and purple left breast . . . probably still a no.

Peas Aren't Doing It For Me This Time

Count me out for fun stuff I'd hoped to do later this month.  Because for now the count is at Breast Pain = 7.5 Complication Pain 9.5

And I've learned to never discount that there may be something you'd never heard of that could hit when you were looking elsewhere.

Less Boobage Awaits

It's 3:30 AM and I leave at 9AM for the hospital. It could be that I'm a little nervous.

Most everyone knows that I'm  going in for surgery and that it will complete this phase of the rebuilding of my breast after it was removed because of a sudden cancer diagnosis in December 2007 but I haven't said much beyond that.

The process of having a balloon surgically inserted inside the muscle wall to expand it, then gradually injected with saline every few weeks was a laborious one but it was the safest for me given my health history. It involved frequent drives into DC for visits to the office of my surgeon and getting to know some really nice staff at George Washington Hospital faculty medical building. I'll take photos with them next time I see them since It's been a memorable journey and you should meet them.

So tomorrow around noon I get wheeled in to have my chest muscle expander removed and Doctor Chang will then clean out the  capsule and a semi-permanent implant will be added to that pocket created within the chest wall. My other breast will be reduced in size to match the new implant. (I won't even start on the story about nipples.)

Looking for a silver lining I look forward to having 40 year old breasts instead of 60 year old breasts. I'd like to hope for 20 but that's too much to ask in the best case. I can tease Doctor Chang that  I'll be expecting perky but that's as far as that goes.

Since he will be leaving George Washington University for New York at the end of July I am very glad that I will be able to complete this process with the surgeon, Raymond Chang, in whom I have faith and with whom I have developed a good relationship since we first met in December.

His advice has been caring and tailored to my situation. I've never felt pressure to do things his way and I appreciate that immensely.  He's handled my moments of doubt with calm and reassurance, always focusing on what my feelings and needs were.

And I did have doubts. Vacillating between complete removal of the second breast for prophylactic reasons to lessen the chance of recurrence, having no reconstruction at all, opting for a different type implant; I was all over the place. There were many moments of doubt. Well - being truthful, there were days and weeks of doubt.

But Doctor Chang was always interested in my feelings and even the rest of my cancer treatment including what my reactions to oncologists and other doctors were. And when I was at my most vulnerable he was at his most understanding and helpful, showing a genuine effort to not be the cold surgeon but to emphasize that all women are different, have different needs and reactions; he encouraged me to be patient and understanding with myself.

I'd be lying if I said I wasn't apprehensive. I've not had surgery at George Washington before and don't know the system, the rooms, the process. And this time I'll have drains on both breasts - double the pain. I don't know if my husband can spend the night like he did at Sibley and Reston Hospitals. This time I'll have two sore arms and two sides of my chest painful for the week or two after surgery. Dealing with fatigue has been a problem already and I can't imagine that this will make it better. And pain control has been an ongoing issue.

I try not to think that they could possibly find another cancer when they're in there doing their thing. But it does pop up into my mind. More than that I know that another surgery means being out of commission even further and makes more work for my number three daughter who remains my caretaker, nutritionist, sounding board, and who's been forced into the role of private-duty nurse and go-fer.

Then there's the issue of a whole new anatomy to get used to. If there is a change or thickening in the newly shaped breast tissue will I be able to identify it? I don't know.

I anticipate coming home Thursday. But I'll probably do a lot of sleeping even through the weekend and hope I can get daughter #2 to come over and relieve little sister a couple of times during that time. The good news is that this is the last surgery for awhile, knock on wood, and the rest of the family should be able to get back to a relatively normal life soon.

Meanwhile I try to figure out what I'm doing with hormone therapy - and where. . .  and if I think that lab results  from bone scan, CT scan and x-rays interpreted as "no clear evidence of cancer" should merit another look-see by someone more curious and thorough.

What can you, my readers and friends do? Don't hesitate to offer to kidnap me for dinner or lunch, coffee or drinks in a week or so. Yes a meal delivered - no soy - would be grand or a gift certificate for a restaurant that delivers or does pickup might just be the right thing to have. Other options are books on tape. Or I  could just go stir crazy and need someone to spring me, get me out of the house. Thinking about it, it's more likely that Kate aka twitterer Badwolf will need to be sprung on her own - to a movie or a bar just to talk and  to vent like anyone who'd been cooped up with me for weeks would need to.

I'm just looking forward. Only a few more days wearing bras is something to look forward to.